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ERN-RND | European Reference Network on Rare Neurological Diseases

ERN-RND | European Reference Network on Rare Neurological Diseases

for rare or low prevalence complex diseases

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Disease Group: Dystonias, NBIA and Paroxysmal Disorders

Scientific Symposium “European healthcare for RND patients”

Scientific Symposium “European healthcare for RND patients”

28 Oct. 2025 | 8 am CET
Zoom Registration

Speaker: Different Speakers
Part of the ERN-RND Annual Meeting Care-RND25

Recording

Slides

Patient Journeys: Reliable Comprehensive Documents which Summarise a Rare Disease

Patient Journeys: Reliable Comprehensive Documents which Summarise a Rare Disease

23 Sep. 2025 | 3 – 4 pm CEST
Zoom Registration

Speaker: Petya Mihaylova & Mary Kearney
Irish Consortium: Tallaght University Hospital and Children’s Health Ireland & FARA Ireland

Recording

Slides

Updates on the Management of Childhood-Onset Dystonia

Updates on the Management of Childhood-Onset Dystonia

8 Apr. 2025

Speaker: Darius Ebrahimi-Fakhari & Kathryn Yang
Movement Disorders Program, Department of Neurology, Boston Children’s Hospital, Harvard Medical School

Recording

Slides

Treatment of Aromatic l-amino acid decarboxylase (AADC) deficiency

Treatment of Aromatic l-amino acid decarboxylase (AADC) deficiency

Winter school 2025 “Challenges of treating rare neurological diseases”
12 Mar. 2025

Speaker: Thomas Opladen
University Children’s Hospital Heidelberg, Germany

Recording

DBS in Dystonia – the network perspective

DBS in Dystonia – the network perspective

14 Nov. 2024

Speaker: Juho Joutsa Turku
University Hospital, Turku, Finland

Recording

Clinical neurophysiology in dystonia

Clinical neurophysiology in dystonia

24 Sep. 2024

Speaker: Anke Snijders
Radboud University Medical Center, Netherlands

Recording

Dystonic Crisis and Reactions

Dystonic Crisis and Reactions

Winter school 2024 “DBS in dystonia”
17-19 Apr. 2024

Speaker: Victoria Gonzalez
Clinic

Recording

Strategies of DBS Troubleshooting in Dystonia

Strategies of DBS Troubleshooting in Dystonia

Winter school 2024 “DBS in dystonia”
17-19 Apr. 2024

Speaker: Norbert Kovacs
Italy Azienda Ospedaliero-Universitaria Siena

Recording

MER and LFP Signals for Implantation and Programming in Dystonia Patients

MER and LFP Signals for Implantation and Programming in Dystonia Patients

Winter school 2024 “DBS in dystonia”
17-19 Apr. 2024

Speaker: Nicolo Pozzi
University of Würzburg, Germany

Recording

Neuroimaging for Implantation and Programming in Dystonia Patients

Neuroimaging for Implantation and Programming in Dystonia Patients

Winter school 2024 “DBS in dystonia”
17-19 Apr. 2024

Speaker: Martin Reich
Clinic

Recording

Botulinum Toxin – Opportunities and Limitation

Botulinum Toxin – Opportunities and Limitation

Winter school 2024 “DBS in dystonia”
17-19 Apr. 2024

Speaker: Francesca Morgante
St George’s University Hospital London, UK

Recording

Drug Therapy and Neurorehabilitation – Opportunities and Limitations

Drug Therapy and Neurorehabilitation – Opportunities and Limitations

Winter school 2024 “DBS in dystonia”
17-19 Apr. 2024

Speaker: Anna Castagna
Fondazione Don Carlo Gnocchi, Milan, Italy)

Recording

Combined and Complex Dystonias

Combined and Complex Dystonias

Winter school 2024 “DBS in dystonia”
17-19 Apr. 2024

Speaker: Norbert Brueggemann
Clinic

Recording

DBS in Dystonia – Targets, programming and therapeutic challenges

DBS in Dystonia – Targets, programming and therapeutic challenges

18 Oct. 2022

Speaker: Philipp Capetian
University Hospital Würzburg, Germany

Slides

Basal ganglia diseases in childhood

Basal ganglia diseases in childhood

12 Apr. 2022

Speaker: Belén Perez Dueñas
Vall d’Hebron University Hospital, Barcelona, Spain

Slides

Deep brain stimulation in children with acquired dystonia

Deep brain stimulation in children with acquired dystonia

7 Dec. 2021

Speaker: Anne Koy
University Hospital Cologne, Germany

Recording

Treatable dystonia &dystonia in inborn errors of metabolism

Treatable dystonia &dystonia in inborn errors of metabolism

28 Sep. 2021

Speaker: Tom J. de Koning
University Medical Centre Groningen, Netherlands

Recording

Slides

Genetic dystonia and treatment

Genetic dystonia and treatment

2 Feb. 2021

Speaker: Sylvia Boesch
Medical University Innsbruck, Austria

Slides

RCT on intrathecal baclofen for dystonia

RCT on intrathecal baclofen for dystonia

30 June 2020

Speaker: Laura Bonouvrié
Radboud University Medical Center, Nijmegen, Netherlands

Recording

Slides

Paroxysmal dyskinesias: update on clinical and genetic aspects

Paroxysmal dyskinesias: update on clinical and genetic aspects

12 May. 2020

Speaker: Giovanna Zorzi
IRCCS – Foundation of the Carlo Besta Neurological Institute, Milan, Italy

Recording

Slides

Ultrasound diagnostics for cervical dystonia

Ultrasound diagnostics for cervical dystonia

3 Mar. 2020

Speaker: Tobias Bäumer
University Hospital Schleswig-Holstein, Lübeck, Germany

Recording

Slides

Clinical evaluation of dystonia

Clinical evaluation of dystonia

4 Feb. 2020

Speaker: Kailash Bhatia
UCL Queen Square Institute of Neurology, London, United Kingdom

Recording

Webinar Schedule

Latest News

  • ePAG visit at Children’s Hospital Sant Joan de Déu, Barcelona

    July 7, 2025
    Having a rare disease means spending a lot of time around doctors and hospitals. Places, that even adults will not …read more »
  • Meet us at EAN2025

    June 11, 2025
    Are you at this year’s EAN Congress in Helsinki? Then come and visit us at our booth (N21) in the …read more »
  • Review on DBS for Dystonia

    June 11, 2025
    Despite considerable achievements in genetics in dystonias, their response to possible treatment such as Deep Brain Stimulation (DBS) remains to …read more »

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ERN-RND

@ern-rnd.bsky.social

154 Followers 87 Following 147 Posts

European Reference Network for Rare Neurological Diseases (ERN-RND) to improve diagnosis, care & treatment of RND patients.
Free webinars: https://www.ern-rnd.eu/education-training/online-medical-education-for-rare-neurological-diseases/

  • Get to this post

    ERN-RND @ern-rnd.bsky.social 6 days

    💻U#webinar#webinar on “Patient Journeys: Reliable Comprehensive Documents which Summarise a Rare Disease”
    📅23rd September, 3 CEST
    🗣️P. Mihaylova & M. Kearney, Tallaght University Hospital
    Sighttps://t1p.de/3r6k3de/3r6k3
    Joint w/ the European Reference Network for Rare Neuromuscular Diseases and
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 1 week

    Participate in the #EU4Health #Survey on current and future health priorities till September 30! The #Survey is inviting interested stakeholders to share their views on future priorities, orientations and needs for the future of the EU4Health programme.
    hadea.ec.europa.eu/news/targete...
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    ERN-RND @ern-rnd.bsky.social 2 weeks

    What's the status on European #healthcare for rare neurological diseases in #ERNs?

    Join our Symposium on October 28 online (free of charge): tinyurl.com/yc3yts72

    Find the programme here: www.ern-rnd.eu/wp-content/u...
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    ERN-RND @ern-rnd.bsky.social 2 weeks

    Join our free symposium on European Healthcare for RND patients!
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    European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 2 weeks

    Stay ahead in #PaediatricNeurology by reading the #EPNS2025 Abstract Book to get quick insights into the latest research, treatments, and breakthroughs:
    epns-congress.com/wp-content/u...
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    ERN-RND @ern-rnd.bsky.social 2 weeks

    💻U#webinar#webinar on “Neurological and Non-Neurological Aspects in Palliative Care of FTD and PPA Patients”
    📅16th September, 3:00 CEST
    🗣️Renate Wahl, University Hospital Aachen, Germany
    Sighttps://t1p.de/j8mlcde/j8mlc
    Joint w/ the European Reference Network for Rare Neuromuscular Diseases and
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    European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 2 weeks

    Next FREE YEPNS Case Discussion!

    Join us for an interactive journey through three compelling paediatric neurology cases—from clarity to enigma.

    Register at: us02web.zoom.us/webinar/regi...

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ERN-RND European Reference Network for Rare Neurological Diseases

Our mission

ERN-RND aims to support rare neurological patients in Europe in getting a timely and appropriate diagnosis, treatment and care.

ERNs

ERN-RND is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. For more information about the ERNs and the EU Health strategy, please visit https://ec.europa.eu/health/ern_en

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